Sunday, March 11, 2018

15 Years a Progressive MSer

You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment. On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn't normal, that something fundamental has changed. About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you've reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to "retire" at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your ass firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.You remember that years before the limp you'd experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you've been sick longer than you've been healthy. The gods must be crazy, and an indifferent universe could not care less.You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.Then again, you always had a knack for cutting through the bullshit, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine, but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it's coffers overflowing.The ripple effect of the disease is insidious, and you feel guilt at the impact your illness has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.

Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take?

You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was. You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus.

Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead? Priorities, friends, priorities…Here’s one of my favorite songs by the great American songwriter John Prine, the lyrics of which pretty much sum it all up for so many, sick and healthy alike. BTW, an “Angel from Montgomery” is what death row inmates used to call a governor’s stay of execution in the state of Alabama…

Not convinced that the stem cell procedure they are using at Hadassah is nearly as effective as what they are doing at the Tisch center, Where they are using a much more specialized form of stem cell. Also, multiple treatments would be needed order to build up repairs and then maintain them. For instance, Tisch center's upcoming trial will give patients six treatments in the course of one year. It's financially unrealistic to do such a treatment regimen at any of the private for profit laboratories, unless one happens to be a very rich person.

Good point. It remains to be seen if the MSCs from Karussis study will be any less effective. I believe the key to both stem cells’ efficacy is more dependent on the level of disability, or axons left and their reserve capacity to improve function. Unfortunately, as is being recognized by Dr Sadiq himself, there will likely be little benefit for those with an EDSS of >7, regardless of stem cell lineage. I think axonal neurogenesis will not be feasible in the near future and any such improvements with any MSC therapy is due to growth factors and reduction of immune inflammation.

The thing is Dr Sadiq didn't put MARC IN THE TRIAL,because He thinks Marc does not have ms so that trial is not an option for Him .So the only option He has is Hadassah, whether their as good as Dr. Sadiq or not.I want Him to be a little better and I don't care Who does it .If anybody deserves it its Him. Even if it only lasts 10 years on Him .I STILL THINK it's worth researching it.But of coarse it might not work.

Ahh, Marc. How many more words? How many more tears? You have been so transparent and honest. Your blog today is so reminicent of George's first reaction to his MS diagnosis. Fifteen years for you, only six for him. But, I recognize the cry, the quest to know if there is a reason to even know. If my heart can break more than once, your writing has broken it again. Love ya,Hilda

Hi Hilda, sorry to have exacerbated your broken heart. I know that the fifth anniversary of George's passing was a couple of weeks ago, have been meaning to reach out to you. Can't believe it's been five years! Still expect to hear his voice on the other end of the line, or saying something outrageously funny on my voicemail. Miss him, miss you, wish this was all just a bad dream… Maybe in some sense of reality it is… Love you, Marc

Yes, Bonnie Raitt does a great version of this song. I tend to prefer John primest, though, as there's something about a guy singing in the first person in the role of a woman that makes the song even more poignant.

Thank you for sharing so beautifully and gracefully. I can't imagine what comfort your fan base can offer, but know that you support many and touch many more. Our lives would be less without your efforts.

Thanks so much for your lovely words. The comments left by readers telling me I've help them even in just some small way are extremely gratifying. Writing the posts themselves can be cathartic, but knowing that they have impact with my fellow travelers down this twisted path helps me going…

This is such a double edged sword. On one hand I am glad you appreciate the essay, on the other I wish you weren't in a position to have to appreciate it. Nobody should have to go through the physical and emotional grinder that is progressive MS…

Marc, you speak truth, raw, going straight to the heart of the struggle you bear and which, in varying degrees and forms, we all share. Thanks for being such a gifted torch bearer on this dark, uncertain, often painful path.

Sometimes I fear that I am being too unvarnished with the truth, but it's really the only way I know how to write. What's the point of sugarcoating, the point of offering platitudes that aren't worth the energy it takes to get them on paper? There is too much willful blindness to deteriorating norms in this world; I refuse to take part in this subtle form of propaganda and subterfuge… Progressive MS is a horrendous beast that has yet to be fully confronted by the medical sciences. Enough is enough…

Blimey. That went straight for the jugular. You have a gift, a way of writing that enters the jugular, the heart and the brain with a marvelous humour. I went from tears to mentally shouting "yes" to laughing out loud re zombie comments A definite gift

I do believe this is the first time anybody has used the word "blimey" in a comment on this blog. I wholeheartedly encourage more such varied vocabulary. Especially of the regional kind. Glad that I could leave you laughing after touching on some less pleasant emotions. Given the choice between laughing and crying, I'll almost always choose laughter. Of course, a good cry is necessary every now and then, but you certainly don't want to drown in your own tears…

Marc, there are weird, theoretical, "what if" questions I ask myself while lying awake for hours at night. Would I take one gloriously perfect year of spectacular health only to know, in advance, that it would be my last? No, because my kids would be too devastated to lose even a second of time with their basically bed-ridden, agonized mother. Would I allow myself to be scratched (I do love iZombie) if it were to cure me and make me a fully functional, but brain-eating Zombie? I'm afraid the answer would probably be yes. MS has pretty much made me a zombie, anyway.

Yes, fellow MS zombie here. I don't have any kids, and it all honesty I think I would take one week of perfect health even if it meant giving up the ghost at the end of it. And what a hell of a week it would be!

Thank you for putting into words what so many of us feel. Our 15th anniversaries with PPMS fall at almost the same time. In February of 2003, my wife and I were visiting the Mayan ruins at Chichen Itza in Mexico. I lost my balance for no reason and didn't think anything of it, but one of our friends, who had a dear friend with MS for many years, immediately intuited what the problem was. Doctors confirmed it in May and there it was.

I'm currently at EDSS 6.5. Like you, my right side is worse than my left (my right leg is pretty much luggage) and I wonder every day what happened to the life I had, and the life my wife had, and our kids, etc., etc.

You've responded to your curse by helping others, which is a huge mitzvah. You've helped me personally. I'm at Tisch because of you and I found the perfect support forum because of you. I've benefitted from your research and thinking on Lemtrada, Ocrevus, MSCT, HSCT, Rituxan (which I'm currently taking), and more.

None of us deserves this shit, least of all you. But I hope the difference you make to so many others makes a difference for you.

Thank you, Neil. So happy to hear that I've helped you in so many ways, but of course sorry that you needed that help. I think I am going to start Rituxan in the next couple of weeks, so maybe we will see each other in the infusion center. Hope to meet you there…

Thank you, Neil. So happy to hear that I've helped you in so many ways, but of course sorry that you needed that help. I think I am going to start Rituxan in the next couple of weeks, so maybe we will see each other in the infusion center. Hope to meet you there…

Powerful words as always, Marc. There are some days with MS that an actual zombie apocalypse would seem like a day at the beach. I too feel more and more disconnected from my pre-MS life. In Million Dollar Baby Hilary Swank's character laments that she can no longer hear the cheers. Indeed.

Thanks so much, Daphne. Not sure I'm really a leader, just one of the gang who happens to have found a soapbox and megaphone. As for prophets, I've learned to beware them as many of them turn out to be false. I've no aspirations to being anything other than a trusted advocate for all those caught in the same web as I.

Yes, it would be wonderful if somebody could nail down the cause of this disease. Of course, that would require people to actually be looking for the cause, and there are far a few of them. Much money being made to bring with the immune system, and researchers have to pay their bills, too. We have manage to develop a completely dysfunctional medical research system. Time for a complete reboot, if you ask me…

You had a post about media lately... I’m wondering if you would consider doing a Top 5 list of your favorite TV shows or movies or something. There is catharsis in commiserating over MS, but I also like to hear about yourself as well. That is, unless it’s going to be more Wes Anderson shout-outs.... just kidding

I cried for you today. I read your article ‘15 years a Progressive MSer’. I just sobbed about your 1st year wedding anniversary looming while you were getting your head around such a hellatious diagnosis. Just reeling.

The bottom of a downward spiral is where I was. A loong story short, I was diagnosed in 2004 with ms.

Your article affected me in such a way because I hated that you experienced the same bulldozed feeling. You had this beautiful new life and then the rug got ripped out from under you.

I thank you, Marc! Your writing is brilliant and raw! I changed my fb profile pic, but I’m not on too much either. I look forward to reading more of your articles as they impart a feeling of hope and unity. Not sure if unity is the right word but it’s as close as I could get. Basically, when someone else “gets it” there’s a connection. Thanks for that feeling. I need it.

Hi Marc, thank you for articulating the real deal fallout caused by MS disability. My wife's timeline is very similar to yours, just a few years behind you, and she is bedridden and wheelchair bound. It was a progressive downward spiral since her diagnosis in 2006. I always refer to it as watching someone you love in a slow motion car crash where you can't change the outcome, but there it is happening right in front of you. People who are healthy just walking around living their lives in the greatest country in the world, all the while this person you love is living their own personal holocaust. That's what MS seems like to me...a person you love (or yourself) in broad daylight being interred in a concentration camp, when everyone else doesn't even realize there's a war.

You've written something epic here, Marc. It may just be a blog post to some, but for those who've lived it, you've brought light to a dark place, stolen fire from the gods.

My wife lost the ability to speak a few months ago, but she used to love singing 'Angel from Montgomery' and my Dad used to always told me to listen to John Prine for some reason. I never knew it was a metaphor for hope, in the places where all hope should be lost. Small world, my friend, sometimes magical. Soldier on, Marc. We're all connected

I'm sorry to hear of your wife's plight, and your own. It is very gratifying to be able to put to words the experiences of so many suffering similar fates. Of course, I wish the feed I was writing about was something far happier, perhaps winning millions in the lottery or something along those lines.

It's some sort of statement on the nature of life in the 21st-century that so many, sick and healthy alike, are hoping for an Angel from Montgomery. Of course, many of those wishing are oblivious to just how lucky they are compared to the truly desperate. But, then again, who am I to judge anybody else's desperation?

Hi I have just found my way to your blog. I'm a ppmser in new Zealand. Like the no b.s approach. My thoughts frequently go to those around me who I try to protect from my MS where possible is "if only you knew

I have been singing that song for a long time and had no idea what the title meant- thanks for making clarity from mud. Observing your cyber presence, you have made lemonade from lemons or fertilizer from $hit. Your insights, humor, research and dedication to the blog have helped so many people. Your vessel may be failing but your noggin is going strong.

What a wonderful piece you've written here. Like you, I was diagnosed shortly before my first wedding anniversary. Also, like you, I occasionally find myself immersed in the possible ramifications of pre-existing disease upon sudden zombification. Would you still be in a wheelchair? It's an interesting question. Of course, I have seen (though only on TV) zombies that have lost half their body and end up dragging their torso about by using their arms ... so clearly, their arms work normally. One wonders, therefore, whether the lower half is also dragging itself around somewhere off screen. Anyway, now you've gotten me obsessing about it all over again! Honestly, your writing is excellent, honest, heartfelt, wonderfully direct. A pleasure to read your blog.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...